I'd like to say a quick thank you once again to Danielle for her brilliant guest post the other day. Please do check it out, and don't forget that her radio interview on the Pelvic Messenger is scheduled to start at 6pm GMT tomorrow (Thursday 28th July).
It felt great to get some new information and thoughts on Endometriosis onto the blog as I have not written about it myself for such a long time. Part of the reason for this is that due to the intensity of my sickness and physical discomfort during my pregnancy I have had other things on my mind. But in talking to Danielle I realised something that I hadn't consciously accepted.
With Endometriosis being a major cause of infertility, being one of the "lucky ones" who managed to fall pregnant not only without medical interviention but also very quickly meant that I felt a certain uneasiness in sharing the news of my pregnancy and drawing attention to Endometriosis. Despite never having written solely about Endometriosis, I knew that posts about the topic could come up in search engines and bring new readers to the blog who were trying to come to terms with their own fertility issues and to then have them see pregnancy related posts seemed like it might be a smack in the face.
Things were made doubly difficult by the fact that pregnancy has been incredibly harsh on my body. I have been very ill from the word go and it has been an immense battle to keep going most days. I tried not to write too much about my struggles, again for the reason of not wanting to hurt someone inadvertently. And so not only did I steer clear of writing about Endometriosis, but I also limited my writing about Hyperemesis Gravidarum which, like Endometriosis, is a under-researched condition that is often poorly managed by the medical profession and scoffed at by those who believe it is merely "morning sickness".
And yet, despite all of this, there have been many times that I could have written about Endometriosis and pregnancy. Without a doubt, being able to have a baby is one of the most beautiful things and I am so glad that my husband and I escaped the heartbreak of infertility. But at the same time, having had such a challenging pregnancy I know I couldn't do it all again. Most people respond to this with the words "you never know how you'll feel once the baby is born" and "that's just because you are feeling so sick now". What they fail to see is that it isn't just the Hyperemesis Gravidarum making the decision for me (although that is a key point in the way I feel). What they do not realise is that life isn't as easy as deciding to have a baby and simply going for it.
My husband and I had to think really hard about when the best time for us to try and conceive would be. I have suffered with painful periods since my early teens and since 2005 have had two laparoscopies, gone through two chemically induced pseudo-menopauses, and spent an awful lot of time struggling to cope with the demands of everyday life. Completing my degree was difficult when I was so tired all the time. Commuting and working in a busy environment was almost impossible on my worst days. And making the decision to relocate so that I could work fewer hours each week was exhausting in itself.
We did everything we could to ensure that I went into our pregnancy journey as fit and healthy as I could be. But it wasn't enough. I didn't have much in terms of reserves of energy and getting through the nightmare of Hyperemesis Gravidarum was one of the hardest things we have ever had to do. Despite finally being on anti-emetics, I still feel sick a lot and add that to the pain of unstable joints and regular period-like cramping and stabbing pains which we think are caused by possible Endometriosis adhesions being stretched, and you'll see that pregnancy is not as easy is it first seems in our case. We may be able to fall pregnant naturally, but at what cost?
Don't get me wrong: I would never dream of comparing the hell of my pregnancy with the hell of infertility so many women have to face. But what I am saying is that it is so easy for people to misunderstand what I'm saying and even judge me harshly for it. I don't blame any woman who might read this and think "I'd go through as many 'difficult' pregnancies as possible if it meant I got to have my baby" because I know I would think the exact same thing were I unable to fall pregnant myself. But having experienced it I know that I could never do it again.
I have previously touched on my feelings regarding pregnancy, but it was only when talking to Danielle that I realised just how deep the discomfort this issue brings runs. By worrying about inadvertently upsetting someone I guarded my posts from ever truly touching on Endometriosis, which is still a major aspect of my life. It is almost like there are two groups people affected by Endometriosis, those whose fertility is unaffected and those who face infertility due to it. There are so many groups out there for women facing infertility and within that group there is another division: those who never get the chance to be parents and those who do. I've often read the blogs of women who previously found so much support from the infertile community only to wonder where they fit in now that they are expecting a baby or have a family of their own. And if it's hard for them to know what to say and do, having experienced the same feelings as the readers and friends they now worry about upsetting, then it's certainly hard for those of us who never had to face such things.
But does that mean that we should keep quiet about our own experiences and put on a brave face to hide the pain we are suffering ourselves? I feel almost like I have forgotten why I started writing about Endometriosis in the first place. My initial series on iVillageUK was about trying to conceive and mentioned Endometriosis a lot because at that time I had no idea how my fertility might be affected. Since becoming pregnant and starting a series called "a pregnancy journey" I have barely mentioned Endometriosis and it saddens me that I am missing a great opportunity to spread awareness through such a widely read medium.
I remember talking to someone about how I would broach the subject of pregnancy on here and deciding that I would try and be as honest as I could about it because that it what this blog is all about. I write about life, my life in particular because that is what I know best after all, and that means writing about every aspect of it. Endometriosis may not be at the forefront of my mind during pregnancy, but it is always nagging away somewhere behind the more obvious things I'm dealing with right now. I worry about how soon my periods will return after the pregnancy is over. I wonder how bad the Endometriosis symptoms may be. I think about the fact that despite so many treatments over recent years the Endometriosis continued to grow and cause more and more havoc on my life, so what is my next option: do I try another form of birth control or see what my body does on its own for the first time in years? And how will all of this affect my ability to do all I want to as a mother?
Yeah, there are many things I could write about regarding Endometriosis even during pregnancy, and even if there weren't I could still be promoting the work of others like Danielle, because at the end of the day Endometriosis is a chronic condition and it's going to be with me for a long time. But finding that balance between writing about it and trying to ensure I don't come across as "rubbing my pregnancy in other people's faces" is a difficult one. Yet it is one I need to find because if I am to live up to Danielle's kind words about me and the work I do for Endometriosis Awareness, then I need to be writing about it much more frequently than I have in recent months.
So stay tuned for some new projects and ideas I have regarding Endometriosis over the coming months and please do get in touch if you are, or know someone who is, trying to live live with Endometriosis. It would be great to hear from you.
And as a last thought, why not consider following me on Twitter? I finally built up the courage to overcome my complete lack of knowledge regarding it and joined up last night. You'll have to give me a few days/weeks to get to grips with how it works, but it would be great to see you there too. My username is @amandaspatch
It's great to see another post on endo, Amanda. And I know how difficult this one was for you to write. I'm proud of you for being able to get past those fears of "hurting someone" and know that what is going on with YOU right now, is likely going on with someone else. The value in writing about our own individual journeys, as different as they all are, is that we have the ability to touch so many other people who may be going through something similar and feeling alone. I know your posts were a source of strength for me while I was going through hyperemesis because I felt so terribly alone. But seeing that you could write about it made me feel like I could as well (as difficult as that was with so many infertile followers- knowing that complaining at all about our miracle IVF twin pregnancy could be a slap in the face to any number of them). But it was the truth- and so is this post for you. And there are SO many women who are struggling with endometriosis out there right now feeling alone. And I bet there are plenty of women struggling with endo while pregnant and not understanding what's going on and why they have so many stabbing pains (like I've had this whole time- how many times do I have to call my doctor to ask what the HECK that horrific pain is? How many times do I have to go in for an emergency, overly expensive, extra ultrasound because of the awful cramps?) You are a source of knowledge and strength and whatever it is that you have to write about will touch a great deal of people. Write what is real to you, you'll see that it's probably real to so many others as well!
Posted by: One Day | July 27, 2011 at 02:42 PM